Advocates seek to shine light on schizophrenia
If your house is on fire, you can count on your community to come to your aid. But if through the genetic luck of the draw you inherit a potentially debilitating mental illness like schizophrenia, you’re on your own.
At least one of Washington’s congressmen thinks so.
“We have no trouble making decisions about fire departments – they’re a collective responsibility,” says U.S. Rep. Jim McDermott, D-Seattle, in a documentary about schizophrenia airing Wednesday on PBS.
However, he says, “Mental health clearly is an individual issue: ‘That’s your problem.’ We put it all on the individual and say the society has no responsibility for it.”
During the hourlong documentary, “Unlisted: A Story of Schizophrenia,” McDermott, who is also a psychiatrist, weighs in on the cultural and social responses to the disorder.
“We have had this battle in our society, always,” he says, “between what is individual responsibility and what is collective responsibility.”
“Unlisted” – winner of multiple awards, including “Most Compelling Documentary” by the Seattle True Independent Film Festival – is the personal story of Seattle physician Delaney Ruston.
As the film’s writer and director, Ruston chronicles her reunion with her father after 10 years of estrangement. She illustrates the challenges with his schizophrenia and how the system is, for those trying desperately to find a path to wellness and integration into their community, in disrepair.
The film also explores how bureaucracy, the lack of continuity of care and the lack of funding and housing all hamper progress.
But 28-year-old Spokane resident Jordan King has, so far, had mostly good experiences with the system since his diagnosis two years ago.Up until that point, the jeweler and silversmith spent much of his adult life trying to control the symptoms of schizophrenia by self-medicating with street drugs.
“The drugs relieved me of the symptoms for the most part,” says King.
But with the devastating death of his older brother through an accidental drug overdose, King was driven to sobriety. That led to the discovery that he was living with a mental illness.
“I had no idea how strong the schizophrenia would surface 14 months after I got clean,” he says.
Once he got sober, King could no longer blame the drugs he was using for voices he was hearing.
“I started having classic symptoms of schizophrenia: auditory hallucinations – mostly voices telling me to kill myself – (and) delusions, as well as other cognitive difficulties,” he says.
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Schizophrenia has come a long way since the term was coined in 1910 by a Swiss psychiatrist.
Once believed to be a product of poor parenting, doctors and scientists now understand it has genetic roots. Modern studies indicate marked differences in levels of neurotransmitters and brain structure.
Schizophrenia affects a person’s thinking, emotions and behavior. The psychosis that accompanies the condition can include disturbing visual and auditory hallucinations, and paranoia.
King’s experiences, like those of many people with schizophrenia, included some suicide attempts and multiple hospitalizations.
Along with a 12-step program, he credits Spokane Mental Health, a nonprofit dedicated to helping individuals and families with mental illness, for helping turn his life around.
“I came to Spokane Mental Health after a lapse into psychosis and was taken care of for two weeks,” he says, free of charge.
He left stabilized and with a great deal of support: “I was assigned a case worker and psychiatrist, and was encouraged to go to groups such as ‘Life With Schizophrenia’ and ‘Grief and Loss.’ ”
But King’s experiences in the traditional hospital system haven’t always met his needs in the same way.
“In several of my hospitalizations, excepting those at Spokane Mental Health, there didn’t seem to be adequate discharge planning to prepare one for integrating back into the community,” he says.
While King’s experiences have been mostly positive, Kay Sharp has a different take.
Sharp has a 44-year-old son, Mike, living with paranoid schizophrenia. Diagnosed in his early twenties, he has faced a difficult journey.
Mike Sharp, an avid golfer and guitarist, has been hospitalized more than 20 times and made several suicide attempts, including a jump from the roof of a hospital and an intentional high-speed accident on Interstate 90.
While newer anti-psychotic medications have helped her son gain some control of his condition, Sharp feels bureaucracy and politics have stunted progress in other ways.
“The Department of Social and Health Services has created so many departments, policies and paperwork that the left hand doesn’t know what the right hand is doing,” she says.
With Mike’s multiple treatments, she says, she is often mired in red tape and contradictory paperwork.
Sharp has also experienced problems with continuity of care.
“The continuity of care needed by individuals with mental illness does not exist,” she says. “There are great caretakers, but the system is archaic. Twenty years ago, it was far more personal.”
As long as Mike is on Medicaid, he can receive services through Spokane Mental Health.
“However, those treating him at SMH do not participate in his treatment when he’s hospitalized elsewhere,” Sharp says.
Ruston notes in her documentary that politicians in past decades have not followed through with plans for mental health care reform.
“The promise from the politicians from the ’60s was to put the money saved from the closing of hospitals into community care, but it never happened,” she says.
“If someone does need hospitalization, there’s a major shortage of beds for psychiatric care.”
In her research, she discovered that since 1960, more than 90 percent of publicly funded beds have been eliminated. This has had a trickle-down effect, with more and more people with mental illness entering the legal system.
“Once they closed the doors and put the people out on the streets, the money never went to the community mental health centers,” Ruston says in her documentary. “What they did was just gradually shift (this) population into the jails.”
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There are approximately 2.4 million Americans living with schizophrenia, according to the National Institute for Mental Health. Suicide is the No. 1 cause of death, estimated at about one in 10.
Studies show that $62.7 billion was spent on direct and indirect costs of schizophrenia in the U.S. in 2002. Some research estimates that treatment costs will one day exceed those for all cancers combined.
By comparison, according to Centers for Disease Control estimates, there are some 190,000 people living with breast cancer and 36,000 with HIV/AIDS, both highly publicized and well-funded health issues.
The “pink ribbon” Susan G. Komen for the Cure alone has broken the billion-dollar mark in fundraising for breast cancer.
But “funding for research into schizophrenia has not reached the same level of support, both in public fundraising and government support,” says Amnon Schoenfeld, director of King County Mental Health.
With so many people affected by a profound health issue like schizophrenia, why aren’t there more resources?
Funding is often driven by “personalities, politics and public pressure,” Schoenfeld says. “Stigma is still the big barrier.”
Many still see mental illness as a weakness or character flaw, he says.
“There’s no excuse,” filmmaker Ruston says in an interview, “given our financial status in the world, not to designate funds to housing and other resources for those with mental illness.”
Despite the lack of progress in some areas, things are changing.
In 2005, Spokane County voters approved a one-tenth of 1 percent sales tax dedicated to revamping the county’s mental health services.
The programs designed in the following year included a crisis diversion team, providing assistance in finding shelter, food and medications; a network of temporary housing as an alternative to psychiatric hospitalization; and an expanded mental health court to provide better treatment and help prevent repeat offenses.
Spokane Mental Health CEO David Panken has been working in the field for 35 years.
“I’ve seen mental health go from being totally in the dark to coming into the light. I think we’re making wonderful progress,” says Panken.
“We’ve seen advances in medications with fewer side effects and other, better treatment options – but there is still much to do.”
In 2005, Washington Gov. Chris Gregoire signed a landmark bill promoting mental health parity. It requires insurers to treat mental illness no differently than a physical illness.
In the past, insurers either did not cover psychiatric care and counseling, or limited it.
Panken says as the public better understands costs associated with mental health, things will continue to improve.
“As people gain awareness about the significant costs associated with the lack of appropriate mental health care – increased use of hospital emergency departments, unnecessary hospitalizations, more contact with law enforcement and incarceration, loss of meaningful work and gainful employment and lower quality of life in the community – we will better understand the positive return on investment in mental health treatment,” he says.
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For individuals living with schizophrenia, the National Alliance for Mental Illness (NAMI) says identifying symptoms, getting and sticking with a treatment plan, and receiving support from family, friends and community is vital.
Because of its relapsing/remitting nature, schizophrenia can be hard for family, friends and community to see how ongoing care, education and awareness are needed.
Ron Anderson, head of NAMI’s Spokane chapter, has a family member living with the condition.
“While great advances in medical research on the causes and treatments of brain disorders have been made over the past 30 years or so, we continue to struggle with a broken treatment delivery system,” Anderson says.
“This system is as resistant to change as is our cultural bias against people who, through no fault of their own, have a mental illness.”
What needs to change?
“A commitment to understand that psychosis is a matter of life and death,” says filmmaker Ruston. “We can change the quality of life with good resources for housing, work and rehabilitation.
“I’m not here waiting for a cure, but we can do things in the meantime.”
King thinks one of the best ways to make headway is to do just what he’s done: come forward and talk openly about his life.
“We need a village,” says NAMI’s Anderson, “but we can’t have a village until we change the way we think.”
“People need to get involved,” says parent Sharp. “The community needs to come together to help these bright people.
“We’ve gotten complacent. And when my son was well, I got complacent, too. But it’s time to get to work again.”